Living with an Invisible Dis-ease

“We also often add to our own pain and suffering by being overly sensitive, over-reacting to minor things, and sometimes taking things too personally”, Tenzin Gyatso, The 14th Dali Lama quote

One of the difficult issues that people with fibromyalgia grapple with is trying to describe their pain to others. Words such as ache, raw, ragged, searing, blistering, shocking, nagging pain do not always convey the message; the list of adjectives is endless. The vocabulary is not precise and it can be a daunting task to find the right words. Even more frustrating is that the nature of the pain itself changes, sometimes from hour to hour or day to day. Equally as problematic are the areas of the body where the pain attacks, as that too can vary from one place to another or, pain can occur in several areas of the body simultaneously.

Pain research has been built upon the premise that there are scales which can measure the degree of suffering. We have commonly used this language in our every day talk in a variety of ways, for example, we can ask of others : “On a scale of 0 to 10 how did you rate the movie?” Surveys abound with rating scales presumed to quantify qualitative characteristics such as coping, happiness, depression, grief or any other human emotions, attitudes,beliefs and values. We have a strong desire to categorize the subjective elements of our nature and personality in an objective fashion. It is assumed that life could become more simplified if we all experienced it in the same way without taking into account our personal circumstances, age, gender, race, class, and personalities among many other ‘variables’. If we could categorize people according to scales (usually called Likert scales) it would help us in quantifying such subjective characteristics as the pain in fibromyalgia. However, is this possible?

In the October issue of the Journal of General Internal Medicine the results of one research article showed that rating systems failed nearly one third of the time. While they acknowledge that pain is subjective they also suggest that there is reluctance on the part of some people to admit to their pain while others may exaggerate it.

Having spoken with hundreds of fibromyalgia sufferers it has not been my experience that people are hesitant to admit to their pain. In fact, knowing that I too have fibromyalgia they are always ready to discuss the ever present pain but, silence surrounds them among those who do not have the same experience. It is that they simply do not want to sound as though they are whiners or constant complainers to ‘outsiders’ and equally as important, the pain issues are so complex that language becomes difficult. Pain is invisible and talking about it, particularly to those who believe it is all in one’s head is very silencing.

As I discuss in my book, there are many components to the experience of pain, many of which have to do with age, culture, race and gender. One of the Black women I interviewed in my book said that it is not acceptable for the Black woman to complain; she must be seen to be a ‘strong Black woman’. Another woman I interviewed came from Germany where she said to speak of her suffering was to show weakness. Most of the women acknowledged that when men reported pain the doctors took notice, but if they complained they were not as well attended to and often felt ashamed of even mentioning their suffering. When I was in my menopause years, everything I noted regarding fibromyalgia was attributed to menopause. Race, culture, age, gender all play a significant role in how much we are able to share with researchers or health professionals regarding pain. Men must be stoic and generally not complain or else they are afraid of being thought of as a ‘sissy'; women must suffer in silence.

In the late 1980s a Fibromyalgia Impact Questionnaire, was developed to help quantify the symptoms of this syndrome. This rating scale is freely available for all who want to use it and was reported in 1991 by researchers Burckhardt, Clark and Bennett in the Journal of Rheumatology. Pain is a somewhat small component of the questionnaire as are other factors, such as fatigue. Other scales like the Visual Analogue Scale whereby a ‘patient’ marks on a line the amount of pain one experiences ranging from ‘no pain’ to ‘very severe pain’ are also commonly used to measure the symptom. To what extent are these rating scales accurate? It is admirable that researchers are attempting to find ways to measure pain. But is this possible using numbers that depict quantity rather than finding ways to explore quality? As previously mentioned it is as though with the scales one size fits all. It is as if a person’s specific circumstances were all the same as anyone else with this condition. Pain in fibromyalgia can change from hour to hour or day to day. It is not a linear process; it is not static. Pain is like ice cream, it comes in different flavours. Unlike the pleasantly, temporary sensation of ice cream however, pain is horrific and does not end. Instead, it just keeps changing flavours.

I believe that fibromyalgia is a dis-ease of a hyper-aroused nervous system of a highly overly sensitive person. It is not totally reversible; one cannot find a ‘cure’ in the usual sense of the word. We cannot yet adequately describe overwhelming pain and fatigue and the myriad of other often agonizing symptoms that accompany the syndrome. But, there is relief and there is hope that life can be lived more fully. Meditation (practicing Mindfulness..See Jon Kabat-Zinn in my links section), vibroacoustic music (especially harp), music therapy (please see the book by Daniel J. Levitin This is Your Brain on Music which has led me to believe that music therapy might be helpful for people with fibromyalgia), biofeedback, gentle yoga, tai-chi and Qi Gong exercises or any other gentle movements among many other non-invasive relaxation modalities are available, along with newer pain medications such as those I discuss in other articles on this site.

In the book I discuss these options that are available but I do not discuss how to measure and quantify pain.

About the author

I am a Professor Emeritus, School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada. My B.Sc.is in Nursing while my MA. and Ph.D. are in Sociology.
I am married, a mother and grandmother living on the east coast of Canada.
I have personally lived with fibromyalgia for about 40 years and I am about to publish a book through iUniverse, due summer of 2007. This book will detail living with this condition and allow the voices of twenty women who have fibromyalgia to tell their stories.

2 comments

Well… after reading this article and reading Chapter 3 (Pain, Fatigue, Sleeplessness, and Often Depression) I am left wondering if the worst part of this illness is all of the above (and more when you add digestive problems, migranes and so on) or the lack of understanding about what it is that ails us… in the greater world. What a relief it would be… and how much healing it would start… if the general public, our own Drs and our health care workers were all educated on Fybromyalgia… even just to the point where it’s well known that this is not “all in our heads”….

As a Childbirth Educator and Midwife Assistant… I know the value to a woman in the throws of advanced labor… when another woman can simply look at her… an say “I know… it’ hurts so bad right now”… just validating her pain goes a long way… and knowing that you are going to stand by her and do all you can to help! What would the value be to us with Fybromyalgia… if our families… and our health providers could say “I know it hurts… and I’m going to be here to help?” Sadly… the majority still think it’s all in our heads!

Dear Cheryl: In fact, fibromyalgia is actually in our heads… it is pain stored in our memories. It may be physical or emotional but the brain and the mind are powerful and can convey messages that aren’t happy ones. I am working on understanding this more…best wishes, Barbara